This memory came up on my Facebook feed, it reminded me of why I write so much ‘random stuff’ down. This, writing the wanderings of my mind, unedited, helps me navigate through all sorts of situations life shares with me. I am so grateful I started doing this 4 years ago, it’s made the more challenging experiences a little less heavy to carry.
Now and again I share some of these wanderings. Today I thought I’d share a note I wrote a little while ago in a moment of frustration.
Let’s talk about cancer
The word alone strikes fear in the boldest and bravest, so much so that it’s not said out loud.
I know that it was the worst thing I heard when Dyaln was diagnosed but now so familiar I use it regularly and it’s fear inducing power has diminished, well for me at least.
I found that words even the wrong ones have been better than the silence. I have read countless articles on the subject of what to say and what not to say, they all offer great advice, I have heard countless comments, stories and advice that has been comforting as well as wtf, seriously inappropriate. I have been in countless situations both before Dylan was diagnosed and after of being at a loss of what to say, and no doubt will be in the future.
I don’t have a comprehensive list of alternative or better things to say, but what I do have is my personal opinion and experiences and how they make me feel.
The absolutely worst thing for me has been ignoring the issue, not talking to me, the silence has been the most painful thing, isolating and hurtful, it’s what ends relationships, and at a time in my life where I most needed unconditional love, acceptance and compassion the loss of relationships was devastating.
The bombardment of advice, diets, treatments, miracle cures. As much as it is appreciated if you can’t physically introduce me to a child, not one actually a collection of people, who was diagnosed with the same thing and was cured and has no side effects and is happy and healthy at varying stages of life and survival, then honestly it’s useless help. I already feel heartbroken and helpless that the only proven treatment for my child is something with significant life altering impacts, and while it’s being administered it will almost kill him, will definitely impact his quality of life and hopefully cure him.
If you are really so interesting in cures for cancer perhaps supporting childhood cancer research projects or supporting me as I try and advocate for better treatments for childhood cancer would be a more productive way of helping me and others like me.
Never tell me that ‘luckily he is still young’, under the assumption that a young body will recover more easily than an adult body. No, no, no, no …. because childhood cancer is so confronting and hard to talk about there’s a lot of the reality that’s not spoken about or made public. Every part of a child’s body and life is affected by treatment, some worse than others, some things from treatments like brain radiation is progressive and will forever be slowing causing effects, some effects like amputations are …. Well … That’s self explanatory, treatments will affect things like bone growth, teeth, IQ, memory, vision, hearing, fertility, organs, secondary cancers, well the list is comprehensive.
So never compare a child with cancer to an adult with cancer, the lack of awareness and funding for childhood cancer has resulted in these children being treated with drugs and medications meant for adults, resulting in significant loss of life as well as loss of quality of life.
Help me get governments to increase the funding for childhood cancer research.
Getting back to normal …. The truth is there is no going back form this, I am different and our lives are different, what we do now is to navigate our way through to find a new kind of normal. What we do now is adjust to the circumstances we have and continue to live life fully.
Unedited as always 💫